I truly despair!!

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Permalink Reply by Sarah Moore on July 3, 2009 at 10:14pm

She has been on Nutramigen for 7-8 weeks and still has bad reflux (possibly not as bad - hard to monitor over time). I am so tempted to try her back on normal formula again and see how she gets on. Hubby has just made up two bottles and I have to say the Noecate smells so much better then the Nutramigen. Maybe I should persevere!

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Permalink Reply by KELLY WILKINSON on July 4, 2009 at 10:06am

hi my lo has sma lf i got hold of some by ringing round my local chemists to see who stock or could get it p.williams get it easily boots have it online and now i get in on prescription asda chemist order it in at first though i bought some from e bay as its cheaper but if youe desperate to try some thing it looks and tastes like sma gold just without the lactose theres also sma staydown if your not sure if there is an intolerence this treats the reflux but has to made up a certain way if lo is on gaviscon you carnt use both though as they both do simpler things so you would have to stop using it if you chose to try the milk think it can cause consipation as stay down is a thicker formula it is available in boots and most chemists and some supermarkets stock this good luck.x

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Permalink Reply by Sarah Moore on July 4, 2009 at 11:35am

We don't even know if she is intolerant to anything. It was just an option to try and see. She is no worse onNeocate so far but definitely no better. Does SMA LF taste horrible?

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Permalink Reply by Victoria on July 4, 2009 at 1:07pm

Hi hun - we tried pepti junior and my LO would not take it at all - we are currently trialling soya for a week but not sure there is any difference - the dietician who we are under said that if there is no allergy (and you would know withing 1/2 weeks) then aptamil is one of the best quality milks and easiest to digest - aptamil do an easy digest milk also which is thicker and better for the tummy but if I get no joy with the soya I will be swtiching back to the blue aptamil and staying there as I also think its the best milk

If you use colief at max strength then apparently you get SMA LF in effect anyway - we tried this too but no difference to symptoms however she did take that and it smells like normal formula - quite vanillay

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Permalink Reply by KELLY WILKINSON on July 4, 2009 at 3:02pm

sma lf is basically sma gold just without the lactose so tastes the same i know freinds have used colief and its helped but it a pain because it has to be put in bottles 4 hrs before you want it and if you dont get the timing right it wont work the principle of both is the same if it is a lactose intolerence then iwould chose to go for a milk lf the sma lf dosent work then the problem isnt lactose intolerence so the colief wont work either as what that does is break down the lactose in the milk that why it has to be in for four hours before to work also at 10 pounds for a bottle that only lasts a week its expensive when you can just get LF milk a friend of mine really struggled to get it of the gp and they wouldnt test for it neither just told her to buy it and said your baby will grow out of it where with the milks you ask to be referred to a dietican who will prescribe it for you this is just what i have trialed with my son who was lactose intolerence (no reflux) and my lo now who does you could always try sma staydown as this is a refux milk if your not sure about intolrences my los had very loud bottom burps that would hurt on occassion very loose stools some times had green inthem and would scream for at least 2hrs solid at some piont of the day and be irratable the rest also didnt sleep well day or night hope this helps every child is different and we all do our best dont we to help them good luck.x

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Permalink Reply by Ginny S on July 5, 2009 at 12:30pm

I only have a minute, but you should definitely try neocate, it is the only dairy free formula. Pepti J and all the rest have elements of dairy in them. If I look back on my experiences (Stella is now 20 months old) I wish I had tried neocate at the beginning. She has severe reflux and allergies - gut allergies, eosinophilia, which do not show up in blood tests. she is still on omeprazole and ranitidine and now on anti histamines too. You need to see Dr Shah at Great Ormond Street, he is the top person in the country. You can see him privately there if desperate and then get transfered on NHS. Or you can see him at Viveka in St. john's Wood, London. Some babies (like Stella!) vomit neocate as well. Stella could not tolerate anything. She didn't vomit aptamil but did vomit all the prescription milks, but I wonder if that is because we tried them so far down the line (when she was one). If baby is older than one you can try flavoured neocate. you can also mix rice milk and neocate to get them to take it, increasing the neocate to get rid of the rice milk (no calories in rice milk). Also you can add something tasteless called calogen, a fat supplement to rice milk when you get to that stage. Avoid dairy if you can as 50% of reflux is caused by allergy. Stella had awful poohs as well. Soya was a disaster for us, good for about 2 weeks, but they will eventually become allergic to it too. Very unlikely that your baby will be able to tolerate it for long as most babies cross react and become allergic to it. Stella very ill on soya. Good luck, ginny

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Permalink Reply by Sarah Moore on July 5, 2009 at 1:50pm

Thanks Ginny. Josie is 12 weeks old so we are a long way off adding things to her milk or weaning.
We have had her on Neocate for a couple of days as the general consensus that she would only take 2 oz of Nutramigem because of the taste but Neocate smells pretty similar (though marginally better). Her intake has been exactly the same if a little worse - I know a new formula can do this but the point was she would take more because the taste was better. The hypo milk route was taken 8 weeks ago just to see if she is intolerant. I just don't know if she is or not. She is still being sick on Neocate - even with the small amounts she is taking. It has also made her constipated. I am surprised as I thought Neocate would be really easy to digest etc.
From what I have read about soya I don't want to go down that route. Overall her reflux is managed at the moment with meds etc but she doesn't seem able / want to have more than a little fluid in her. AT 5 weeks she was taking 4 oz no problem. I am thinking of getting carobel and seeing if a thicker consistency will help her take it.
I am more worried today because all she wants to do is sleep.

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Permalink Reply by Ginny S on July 5, 2009 at 6:53pm

poor you - I sympathise/empathise. Stella wasn't diagnosed until 4 months, so I'd already gone through weeks of hell. I was breast feeding at that stage. If you think it might be taste, I'd try Aptamil Easy Digest for a cow's milk option, with gaviscon. Stella had that until 9 months as she kept vomiting all the alternatives. Apparently a small percentage of children are also allergic to neocate. Stella just would not drink it. She threw up hugely on it, it was awful. I used to feed her over a bath. Then she just stopped drinking altogether. It was a nightmare. However, she was older so I wished I'd had a go before the taste was so much of an issue.

There is a milk that you can get on prescription, cow's milk, called .... eek .... I can't remember .... it is thicker and people on this site tried it to good effect. Ask your doctor, it's a cow's milk thick formula.

Are you on omeprazole? Much the best and most effective drug. Ranitidine can be used with it if symptoms, like Stella are very bad. I used to spend all day trying to feed stella. She took more at night. I found domperidone very detrimental. Stella screamed all the time on it, and I have met lots of people who said the same. It can give them terrible stomach cramps. Stella was much better on omeprazole without domperidone. Also try feeding baby on a pillow, with her body at 45 degree angle. I could never hold Stella and a maternity nurse gave me that tip. Then you can shake a rattle or whatever to distract them. Essentially though if you have to go to those lengths baby is still in pain. Dr Shah is the man who knows all about the milks and reflux and allergies ... I only went to see him recently and wished I'd gone before. We let it all get so out of control sticking with the hosptial and paed I was with ... before being transfered up to London where they have the specialist care needed for these problems. Also a dummy is essential. you can always pull the dummy in and out as you feed, that helped me. I'll try to think of other tips. Hang in there, it will get better. I used to cry my eyes out worrying about how little Stella drank. It used to take me 2 hours to get 4 oz into her. I didn't cut off feed times eventually, as I tried every which way. Dream feeding was better so I'd pack in some extras at night in desperation. Very common with reflux. Good luck. x

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Permalink Reply by Ginny S on July 5, 2009 at 8:01pm

I just had another thought: basically a child will not drink or eat if they are in pain. Stella just would not take anything and in hindsight I should have pushed for more pain management. That really is the most important thing if you have already been experimenting with the milks. However, you do need to persevere with the neocate. If the gut is damaged it takes up to two months to recover from allergy, not a week, I know this from the top paeds and also from experience. What meds are you using? I wish Stella had been on omeprazole earlier. We didn't get onto that until month five or six.then you can drop other things like gaviscon.

Secondly, your baby could also have leaky gut syndrome. Has anyone told you about this? Baby could have a thrush/candida overgrowth in the gut and this causes food molecules to leak into the blood stream, and thereby gives baby cramps and leads to feed refusal. You should put baby on a probiotic, but you need to get the Biocare one that is dairy free (pro biotics are made from cow's protein). There is an infant powder made from frutose, called frutobasilis. You can get it from a company called Nutricentre, they are in the phone book and you can order on line. Again Dr Shah knows about leaky gut.

Food was a disaster for us, so the sooner you get to the bottom of what is going on the better.

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Permalink Reply by chezzie8 on July 5, 2009 at 9:38pm

Hey Ginny,

How are you doing hunny? I never knew about Viveka, interesting will have to ask DR Shah about it. How did it go with him, was Stella scoped then? My son was diagnosed by him with Eosinophilic Colitis and is on an anti inflammatory 4 tmes a day. Not a drug to take lightly, but he is doing much better and is now actually eating soilds now, all be it just a few but we are getting there. My 3 yr old though has got worse and looks like will need to be be scoped at some point.

Sorry to jump on your thread Sarah, like advised stick with the Neocate, with our daughter it made a massive difference after a few weeks. Our son sadly even on Neocate didn't get better so he was scoped by Dr Shah at 5 months. His reflux got better and is better now on his meds for his bowel. Neocate does cause constipation sadly.

All the best,

Cheryl x

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Permalink Reply by Ginny S on July 5, 2009 at 10:35pm

Hi Cheryl,

Ditto to Sarah, but would love Cheryl's advice! Cheryl, what meds is your son on? My three year old has eosinophilia too, but eats like a horse so no probs, just a restricted diet. Stella is a nightmare and I would love any more info on anti-inflammatory drugs. Do you mean ketotifen? How long did they take to work? Are you on a totally restricted diet too?

I am with the gastro paed team at Chelsea and Westminster, but decided to go and see Dr Shah at Viveka through a friend, also with a six year old, four year old and two year old all with reflux/allergies. They were all diagnosed with eosinophilia, so I decided to go there too. In fact Stella had been scoped at one year by Chelsea and West, they found blistering in her lower stomach and worse into her bowel. They didn't call it eosinophilia, but when Dr Shah looked at the scope results, he said that Stella had that without a doubt. I also have a three year old with multiple food intolerances (dairy, wheat, gluten, soy), but he just got really bad diahorrea, I never had the whole screaming, refusing to feed, vomiting food, etc. etc. I still had Stella on soya when I saw Dr Shah in April. He said she was so severe she needed to go on steroids to calm her whole system down. We did that and she started to eat after about 8 days (she would only eat tiny amounts of chicken and gluten free pasta before that and was mostly skipping meals altogether). She then went on to rice milk with calogen too. However, she got chicken pox on steroids, which is really dangerous, and then was on a host of drugs for that and in and out of hospital for two weeks. Then she did carry on eating while the steroids were in her system (a miracle and so wonderful to experience), but as soon as she was clear of them she started to stop eating again. I've had a really bad time recently, we are down to three foods again (chicken, peas and white fish) so now Dr Shah has started her on ketotifen and nalcrom. Have seen a mild improvement (nibbling some dry cornflakes for breakfast etc.) but it is all such a struggle. She will only eat if being distracted by a book and in total silence, so I have to try and get someone to come over and take my son out for half an hour for meal times. Chelsea and West now want to scope her again and do a colonscopy. I am really unsure about them doing more tests as they already know she has blisters but haven't worked out why. They also say she could just have really severe reflux, but she is on the max medication so I don't know what to do about that.

Any info on drugs would be much appreciated. Is Eosinophilic colitis the blistering in the bowel? Have they worked out what is causing it in your son? Stella doesn't eat anything now so clearly food isn't the only issue. I am being told it could be caused by her environment, like hayfever, but in the gut .... but what can you do about that?

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Permalink Reply by Sarah Moore on July 6, 2009 at 12:23pm

Thank you Ginny and Cheryl for your advice. We are going to stick with Neocate for a while and see how it goes.

My husband slept with her last night and says she does wake up hungry in the night but doesn't cry - she just sucks her thumb. I hated feeding her in the night because she was always in so much pain afterwards she took hours to get back to sleep. But I guess I am going to have to set my alarm and go in in the night to feed her. Though even when she has gone hours hungry she still only wants 2 oz and I squeeze in 3.

She never cries for hunger or from pain. She just seems uncomfortable after a feed and squirms through it. I have been told to leave it 4 hours between feeds but that's 6 feeds a day/ night so still only 18 oz a day. I will see how it goes but don't think she wil up her consumption so may try every 3 hours so at least it's an extra feed so 3 more oz.

I really feel for how much you have gone through and you both sound very brave about it all. As for me, it is started to affect my relationship with husband as I get so upset all the time and he thinks I should calm down.

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